SMASAC Working Group Post Polio Syndrome - Scottish Health On ...

SMASAC Working Group 

Post Polio Syndrome/ 

Late Effects of Polio

SMASAC Working Group 

Post Polio Syndrome/ 

Late Effects of Polio 

The Scottish Government, Edinburgh 2011

© Crown copyright 2011 

The Scottish Government 

St Andrew’s House 

Edinburgh 

EH1 3DG 

Produced for the Scottish Government by APS Group Scotland 

DPPAS11404 (04/11) 

Published by the Scottish Government, April 2011

Introduction 

Scottish Medicines and Scientific Advisory Committee Working Group 

Post Polio Syndrome/Late Effects of Polio 

The reduction of polio in the last 50 years, and its eradication from large parts of 

the world, has been one of the great triumphs of immunisation policies. It was 

formerly a greatly feared disease causing death or substantial disability in 

previously healthy, often young, individuals. The period between 1947 and the 

early 1960s saw a series of epidemics in which between 3,000 and 7,000 cases 

were reported in the UK. The introduction of the Salk polio vaccine in 1956 and 

the Sabin vaccine in 1962 produced a dramatic change in the UK and elsewhere. 

Since 1962, less than 100 cases have been reported per year, and the last 

“natural” case of polio in the UK was in 1982. Only very occasional cases have 

been reported since then 1 which have been imported cases, vaccine induced 

cases or similar syndromes caused by other viruses. In 2002 there were less 

than 2000 new cases worldwide, and Europe. The Americas and the Western 

Pacific regions are certified polio free. Eradication of polio infection from the 

whole world within a few years is a feasible goal. 2 

Why then is this report necessary in Scotland in 2010? A substantial number of 

people who were affected as children during the polio epidemics in the middle of 

the last century are still alive. The youngest of them will only be in their early 

50s. In recovery from the acute attack, individuals were encouraged to get on 

with their lives using aids as required. This bred an admirably independent 

attitude in the “polios” or “survivors” as many refer to themselves. As they have 

aged, many years of abnormal gait or weight bearing have taken their toll, often 

added to by effects of aging itself. Thus, those experiencing these late effects of 

polio (LEOP) have found their needs for services and aids increasing. Accepting 

these needs conflicts with the independence so many have fought to maintain 

over the decades. 

In addition, Post Polio Syndrome (PPS) has in recent years been recognised as 

a distinct clinical condition which now has agreed diagnostic criteria. In this still 

incompletely understood condition, individuals who had suffered polio develop 

new neurological difficulties which cannot be explained on the basis of the effects 

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of the acute attack, aging or another disease. Typically, the features develop 20 

to 40 years after the acute attack. Mobility problems are most common but other 

features, such as respiratory difficulties may also occur. Many of these issues 

are covered fully in a very helpful review which appeared after the Working 

Group completed its work. 3 

The Scottish Post Polio Network (SPPN) has campaigned since 2001 for greater 

recognition of the needs of individuals with new or continuing problems due to 

polio. Following their representations to Scottish Ministers, the Scottish Medical 

and Scientific Advisory Committee set up a Working Group in 2008 to consider 

the issues. The current report is the result. 

The main messages from the report are: 

• There is still a significant number of individuals in Scotland affected by 

PPS/LEOP who will require services for up to another 40 years. 

• Many of the difficulties faced by PPS/LEOP individuals are the same as 

for individuals with other chronic neurological conditions. 

• PPS is a diagnosis of exclusion and other possible causes of the new 

features must be excluded before it can be accepted. 

• Many healthcare professionals who will encounter individuals with PPS 

have, understandably, little or no knowledge of this newly recognised and 

relatively rare condition. Even many polio survivors are unaware of PPS. 

• Services are patchy and poorly coordinated. 

With these findings we have recognised the importance of empowering the 

individual who has suffered from polio by making them more aware of PPS/LEOP 

and of encouraging them to use services to which they can self refer. The 

Report indicates how health and social care organisations, including those in the 

voluntary sector, can carry such activities forward. We have also considered 

possible models of how the development and coordination of services might be 

tackled. The work carried out in considering these options will also provide a 

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good template for considering how individuals with other long term neurological 

conditions might be supported. 

Chairing the PPS/LEOP Working Group has been an enjoyable and productive 

experience. The members of the Working Group contributed generously of their 

time and their expertise in a collaborative spirit. Particular mention must be 

made of the members of SPPN who served on the Working Group. Without their 

willingness to share their personal experiences, and those of their fellow 

members, the Working Group would not have been able to gain such a detailed 

insight into the key issues. I am most grateful to all members of the Working 

Group and to the staff of the Scottish Government Health Directorates (SGHD) 

who so ably supported it. 

Prof Jim McKillop 

April 2010 

1. NHS Website http://www.immunisation.nhs.uk/Vaccines/DTaP_IPV_Hib/The_diseases/Polio 

accessed 6 th April 2010 

2 Emerson CI, Singer PA. Is there an ethical obligation to complete polio eradication? Lancet 

2010; 375: 1340-41. 

3 Gonzalez H, Olsson T, Borg K. Management of postpolio syndrome. Lancet Neurol 2010; 9: 

634–42 

3

Executive Summary 



Background 

It is some 50 years since the last epidemic of acute poliomyelitis in Scotland, but 

significant numbers of polio survivors still experience the after effects of the 

illness. In some this has been aggravated by the effects of aging and/or the 

development of the recently recognised PPS. Following representations from the 

Scottish Post Polio Network (SPPN), the Scottish Medical and Scientific Advisory 

Committee (SMASAC) set up a Working Group with the following remit: 

To report to the Scottish Medical and Scientific Advisory Committee 

(SMASAC) on the following issues relating to PPS and LEOP: 

• Defining the condition; 

• Determining its prevalence in Scotland; 

• Raising awareness of the condition, especially in primary care, through 

adaptation for Scotland of existing guidance; and 

• Considering the potential benefits of a Managed Clinical Network 

approach to the provision of services. 

The Working Group consisted of polio survivors and a range of healthcare 

professionals. It met on seven occasions between November 2008 and February 

2010, taking oral and written evidence from a variety of individuals and 

organisations. Secretariat support was provided by SGHD. 

Section 1 

This considers the definition of PPS and of the LEOP. It indicates why the 

working party felt it was important to consider both of these conditions. Work by 

the Scottish Public Health Network, on behalf of the Working Group, noted the 

difficulties of obtaining a precise estimate of PPS/LEOP in Scotland. From that 

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work and from information in the literature, an estimated prevalence of between 

1,000 and 6,000 cases in Scotland was determined. This section also notes the 

substantial lack of awareness of PPS among healthcare professionals and even 

polio survivors. Finally, the section places PPS/LEOP in a broader policy 

context, using it as an exemplar of chronic neurological conditions. 

Section 2 

In this section, the diagnosis and management of PPS/LEOP are considered. 

Attention is drawn to key documents such as the Queensland Health Review on 

the Late Effects of Polio and the recent British Polio Fellowship (BPF) booklet on 

PPS. The key message is the importance of treating PPS as a diagnosis of 

exclusion and of always excluding other possible causes for the patient’s new 

clinical feature(s). Advice is given on the management of various aspects of 

PPS/LEOP, including sleep and respiratory problems, exercise, orthotic needs, 

wheelchair services and lymphoedema. The importance of multi-professional 

services is stressed as is the need to consider both medical and social needs. 

Section 3 

This consists of a review of current and possible future service models for 

PPS/LEOP, ranging from the status quo to establishing a national specialist 

centre. The patchy and unsatisfactory nature of current services is noted. The 

possibility of patient-self referral into some services is noted. 

Section 4 

This section considers the important role the voluntary sector has in informing 

and supporting those with PPS/LEOP. In particular, the work of SPPN, BPF and 

Disabled Living Centres is highlighted. 

Section 5 

In this section the following recommendations are made: 

• The definition of PPS set out in the National Institute for Neurological 

Disorders and Stroke (NINDS) criteria should be accepted. 

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• Individuals with possible PPS should be referred to a neurology centre for 

evaluation. 

• Those with respiratory features should be referred to a respiratory centre 

for assessment, including sleep studies where indicated. 

• A prevalence of 1,000 to 6,000 should be accepted for Scotland. The 

Working Group does not believe that further epidemiological work in this 

area is justified. 

• It is necessary to raise awareness of PPS amongst health professionals 

and polio survivors. The Working Group recommends that the BPF 

booklet on PPS and the Queensland Review should be made widely 

available to polio survivors and to health professionals in NHSScotland. 

The Group also recommends that SGHD considers how the NHS Direct 

Map of Medicine pathway for PPS could be made available to 

NHSScotland. Information on self-referral policies and processes for 

community nursing, occupational therapy and physiotherapy services 

should be collated and made available via the SPPN website. 

• NHS Quality Improvement Scotland (NHS QIS) should be asked to 

consider the development of Best Practice Guidelines for the treatment of 

PPS/LEOP for physiotherapists and orthotic service providers. 

• SGHD should ensure that the needs of those with PPS/LEOP are kept in 

mind during the process of implementing the NHS QIS clinical standards 

for neurological health services. The Regional Planning Groups should be 

asked to consider establishing a MCN for PPS/LEOP alone or in 

conjunction with other conditions where patients have similar needs. 

The Report ends with a list of key references and a number of appendices which 

explore in greater detail some of the topics considered in the main body of the 

Report. 

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Section 1- Background and prevalence 

1.1 Criteria and definitions 

There are agreed clinical criteria for a diagnosis of PPS such as the National 

Institute for Neurological Disorders and Stroke (NINDS) criteria (detailed at 

Annex A). In addition, a considerable number of polio survivors will 

experience new symptoms, related to their childhood polio, without fulfilling 

the diagnostic criteria for PPS. These people may more accurately be 

described as experiencing the late effects of polio (LEOP). Early in its 

discussions, the group felt that to focus exclusively on patients with a formal 

diagnosis of PPS when considering the issues of awareness raising and 

service provision would disadvantage those polio survivors who do not have a 

diagnosis of PPS but are experiencing similar problems. This report will 

therefore consider both PPS as clinically defined and LEOP. 

At its first meeting, the group considered and accepted the following remit: 

“To report to the Scottish Medical and Scientific Advisory Committee 

(SMASAC) on the following issues relating to post-polio syndrome and late 

effects of polio: 






approach to the provision of services.” 

1.2 Symptoms 

The symptoms experienced by people with PPS and LEOP vary considerably 

in their range and severity. Commonly, new muscle weakness, fatigue and 

pain are reported, and in some cases respiratory problems may develop or 

worsen. New and/or worsening disability will require review of the individual’s 

need for orthotic, physiotherapy and occupational therapy services, as well as 

consideration of walking aids or wheelchair use. Reduced mobility is likely to 

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affect independence. Psychological difficulties related to this unexpected 

change in personal circumstances are common. PPS commonly develops 2- 

4 decades after the episode of acute poliomyelitis, and as the last major 

epidemic of polio in Scotland was in the late 1950s, most affected individuals 

are now aged 50+. Since acute polio is now exceptionally rare, post polio 

problems are self-limiting in terms of overall prevalence (barring rare new 

cases and immigration), but are not a short-term concern. Support for 

individuals affected by PPS or LEOP will be required over the next 40 years. 

What are the symptoms of PPS? 

(adapted from ‘Post Polio Syndrome: A practical guide to understanding and living with the 

condition’ © The British Polio Fellowship 2009) 

►Weakness: New or increasing weakness is often the most easily 

recognisable symptom of PPS 

►Muscle fatigue: This is common in PPS 

►General fatigue: An overwhelming feeling of exhaustion, weakness 

and sometimes mental fatigue 

►Muscle pain: This is very common in people with PPS and is usually 

described as aching, especially after activity 

►Joint pain: Weakness and injury around joints can also lead to pain 

due to compressed (pinched) nerves 

►Muscle loss: People with PPS may experience loss of muscle bulk 

►Sleep disturbance: Sleep disturbances can be common 

►Breathing problems, problems with swallowing, cold intolerance 

1.3 Prevalence 

An accurate estimate of the prevalence of PPS is exceptionally difficult for a 

number of reasons. Firstly, case definition is complicated by the spectrum of 

residual weakness experienced by people with PPS and by the number and 

complexity of presenting co-morbidities. The variability in reported estimates 

of PPS prevalence derived from research studies described in Annex B is 

clear evidence of these difficulties in case definition. Secondly, there is a 

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general lack of awareness among polio survivors themselves about PPS, 

meaning that many people will not have made themselves known to NHS 

services. Recognising that a reasonably reliable estimate would be required 

for planning purposes, the Scottish Public Health Network was asked to 

provide guidance to the group on the potential for further work in establishing 

prevalence. The Network’s report is included at Annex C. It concluded that 

the benefit to be gained from a more precise estimate was unlikely to justify 

the time and expense which would be necessary to design a surveillance 

method to overcome the difficulties outlined above. For the purposes of this 

report, therefore, the number of individuals in Scotland who may be affected 

by PPS is accepted as between 1,000 and 6,000. 

1.4 Awareness and understanding 

As a relatively recently defined clinical diagnosis, PPS has historically been 

under-recognised by the medical and healthcare professions. Personal 

testimonies and anecdotal evidence from polio survivors confirm that there 

have been difficulties in accessing appropriate treatment, which has 

depended to a great extent on whether the individual’s GP had knowledge 

and understanding of PPS/LEOP, and of appropriate onward referral. 

Acceptance and understanding of PPS/LEOP has improved in recent years, 

but not in a consistent or coordinated manner. Patients may continue to 

experience varying levels of knowledge of PPS/LEOP among the healthcare 

professionals they deal with. This is likely to be a particular issue at 

GP/community care level, partly since the number of polio survivors any 

individual GP will have registered to their practice is very small. Similarly, 

district nursing, occupational therapy (OT) and physiotherapy allied health 

professionals (AHPs) will encounter polio survivors among their caseload only 

infrequently. Once appropriately referred, however, the patient is more likely 

to be treated by a consultant with knowledge of PPS/LEOP. 

1.5 Polio survivors’ awareness 

Knowledge among polio survivors themselves was also felt to be poor. A 

recent publicity campaign organised by the SPPN, with SGHD funding, which 

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featured case studies of polio survivors and encouraged those with new 

symptoms to contact the SPPN, confirmed this. Among the responses 

received, some common themes emerged including: no prior awareness of 

PPS, expressions of relief to hear of other polio survivors experiencing 

symptoms, a tendency to blame deteriorating physical function or fatigue on 

ageing only, difficulties in accessing treatment and having symptoms ‘taken 

seriously’. There is a clear respondent bias in this sample, since polio 

survivors who are aware of PPS/LEOP and receiving appropriate treatment 

are less likely to have responded to the campaign. However, of the estimated 

1,000 to 6,000 polio survivors in Scotland likely to be experiencing PPS at 

some level, only 500 are known to the SPPN and/or the British Polio 

Fellowship (BPF). 

1.6 Policy Context 

PPS/LEOP is an exemplar of both a long term condition and a neurological 

condition. In keeping with the generic work which SGHD is undertaking on 

long term conditions, this report draws on the experience of people living with 

PPS/LEOP in order to promote improvements in service provision. These 

services will also benefit from the development of the Scottish Government’s 

Quality Strategy, which not only emphasises the value of people’s stories but 

which will also have self management of long term conditions at its heart. 

As a neurological condition, PPS/LEOP will also form part of the work which 

NHS Quality Improvement Scotland (which is replaced Healthcare 

Improvement Scotland from 1 April 2011) currently has in hand to implement 

the clinical standards for neurological health services that it launched in 

January 2010. Central to that process is working with key stakeholders to 

build a culture of improvement that will result in measurable improvements in 

neurological services for patients in Scotland. The group is keen that those 

living with PPS/LEOP should benefit from those improvements. 

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Section 2 - Diagnosis and management 

2.1 Diagnostic approaches 

There is no specific diagnostic test for post polio syndrome and some 

clinicians still contest whether it is a specific diagnosis. It is a diagnosis of 

exclusion. In considering a diagnosis of PPS or in attributing symptoms to the 

late effects of polio in someone presenting with a possible history of polio, the 

group suggests an approach based on the following initial questions: 

• Did the individual have polio? 

• Are their new clinical problems due to a different disease? 

• If the patient appears to be have PPS/LEOP, are the symptoms 

mechanical or due to new neurological deterioration? 

Did the individual have polio? 

It may seem strange to ask whether someone who has been told for years 

they had polio ever had the condition, but this question cannot always be 

answered with certainty. A number of studies have quoted figures of 

between 5 and 15% of patients presenting to post-polio clinics whose 

belief that they had polio could not be substantiated 1, 2, 3 . There is often 

little clarity about the recall of the original illness and old medical records 

may be unobtainable. In addition, some cases of polio had few 

symptoms. The likelihood that the individual had polio can be assessed 

by asking about when the illness took place; where the patient was treated 

(certain hospitals were more likely to take polio cases); the length of time 

the person was in hospital; any procedures that were undertaken (e. g. 

plaster beds, tendon operations, respiratory support), the pattern of the 

illness up to when the most severe disability was and what the patient was 

like at discharge. It is also important to remember that some cases never 

reached hospital and thus the above questions will not always be relevant. 

This should be followed by clinical examination to establish whether the 

features now are typical of previous polio. However, confirming the 

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presence of features of previous polio does not exclude the possibility that 

the patient’s current problems are due to other conditions which have 

developed. 

Are the new clinical problems due to a different disease? 

Much of the post polio diagnosis has to be a diagnosis of exclusion, and 

even once previous polio has been established it cannot be assumed that 

new symptoms are due to PPS. Warning signs might be abnormal 

sensation (either reported as a symptom or found on examination), new 

upper motor neurone signs or rapidity of onset. It is essential that other 

causes for the patient’s symptoms and signs, particularly those which are 

remediable, are assessed and excluded. 

► The following features are compatible with PPS/LEOP, though 

other causes must also be considered: 

• Breathlessness 

• Fatigue 

• Sleep disturbance or orthopnoea 

• Weakness/wasting in any territory 

• Pain 

• Falls or fracture 

• Dysphagia 

► The following features are very unlikely to be due to PPS/LEOP: 

• New sensory change (except entrapment neuropathy in 

LEOP) 

• Bladder disturbance * 

• Upper motor neurone signs 

• Change in personality or dementia 

• Involuntary movements 

*Bladder disturbance has been described as being due to PPS/LEOP but 

is much more likely to be due to other causes. 

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If the patient appears to have PPS/LEOP, are the symptoms mechanical 

or due to new neurological deterioration? 

If the symptoms do appear to be due to a polio related process, there is 

then a need to differentiate mechanical issues from new neurological 

weakness. This is done initially by history and examination. On 

examination, the patient’s gait, their limb length, their back, range of 

movement in the joints and muscle weakness must all be assessed. Nerve 

entrapments (more common in post polio patients) should be excluded. 

Degenerative joint changes may occur either in the affected limb or in 

unaffected limbs which have been compensating for weakness elsewhere. 

If the patient has pain, neurogenic pain must be differentiated from locally 

determined nocioceptive pain. Orthopaedic procedures, such as joint 

replacement, or other interventions should be considered for mechanical 

problems. 

Attribution of new weakness to PPS/LEOP can be difficult when it is in a 

part of the body previously affected in the acute attack. Sometimes 

patients manage until they reach a critical threshold in muscles which 

have been affected mildly or subclinically in the acute attack such that 

they cannot function any longer. PPS/LEOP should be considered only 

after excluding other causes for changing patterns of weakness, 

deterioration in muscle or physical function or decreasing muscle mass. 

Very few patients with post polio will be young adults and muscle bulk 

diminishes with increasing age. There is often considerable difficulty in 

determining how much new muscle weakness is due to PPS/LEOP rather 

than other diseases, disuse or age related decline in muscle function. The 

measures taken to exclude other disease may be helpful in deciding that 

there is a new process going on rather than simple age-related 

deterioration. 

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2.2 Assessment and Management of individuals with PPS/LEOP 

It is essential that the assessment and the management of individuals 

diagnosed as having PPS or LEOP consider their needs across medical and 

social care boundaries. Some of the solutions will be deliverable by 

healthcare professionals only and some by social care only, but a significant 

number of individuals will require input from both groups. Thus individuals 

with post polio problems potentially will require a wide range of services. For 

a number of these services, the individual can self-refer or can go through 

routes other than their GP. There is a challenge in making individuals more 

aware of these alternative routes to services. 

2.3 Exercise and PPS/LEOP 

A wide variety of authors recommend measures that conserve energy, for 

example by aids and appliances and by alterations of lifestyle, but advice on 

exercise in post polio has varied. 

A seminal paper by Maynard 1 suggested that active exercise could aggravate 

pain problems and that no attempt should be made to strengthen muscles 

which were weakened in normal function. Subsequent papers 4,5 supported 

the concepts that one should ‘go for help’ rather than exercise and of 

‘conserve it to preserve it’. 

The UpToDate website states that the greater the degree of recovery from 

acute polio the more likely is later post polio syndrome – suggesting a failure 

of compensatory mechanisms that facilitated the initial recovery. This 

suggests excessive exercise or overuse could predispose to new weakness. 

However, since the late 1980s there has been evidence suggesting that 

tailored exercise regimes might be beneficial 3, 6,7,8,9,10,11 . 

Thus, there is confusion in the literature. However, the European Federation 

of Neurological Societies (EFNS) guideline on management of post polio 

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syndrome 12 recommended that both isokinetic (muscle contraction with 

shortening) and isometric (muscle contraction without shortening) supervised 

aerobic muscular training were safe and effective in preventing further decline 

from moderate weakness. It also stated that muscular training could improve 

muscular fatigue, weakness and pain. Training in a warm climate and nonswimming 

water exercises were particularly useful. Respiratory muscle 

training was said to improve pulmonary ventilation. 

The Queensland Review highlights the possible benefits of hydrotherapy. 14 

2.3a Evidence based approaches 

Based on these studies and recommendations, the group suggests the 

following approaches: 

• Muscles weakened because of previous polio 

Exercising these muscles should be at intensities and for durations below 

those which cause fatigue and should be encouraged particularly for muscles 

which are crucial for a particular function, such as stabilising the hip to permit 

better gait or improving shoulder strength to permit use of an arm where the 

distal muscles are still good. Although isometric exercise has been found to 

be safe in the EFNS guidelines, other papers caution against this. Where 

isokinetic exercise can achieve the same aims, there is less evidence to 

suggest this is harmful. Muscles that are already demonstrating pain on 

everyday movement should be the subject of particular caution. 

• Muscles weakened by disuse 

There seems to be no convincing evidence against exercise in muscles 

weakened by disuse. Exercise of these muscles would be reasonable. There 

may sometimes be difficulty in differentiating between those which are 

primarily weakened by disuse and those weakened by polio particularly as 

detailed neurophysiological testing in post polio often reveals evidence of 

previous polio involvement in muscles previously thought to have been 

unaffected. 

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• General exercise and fitness 

There is sufficient evidence for the beneficial effects of aerobic and 

cardiovascular fitness exercise to recommend this firmly to all patients who 

are not limited by cardiorespiratory disease. In addition, exercise to maintain 

muscle length and joint range (flexibility) and balance can be recommended 

universally, particularly when non-fatiguing and not aimed at muscle 

strengthening. 

2.4 Wheelchair use in PPS/LEOP 

Two problems cause particular concern in post polio: the need to begin using 

a wheelchair after many years of independent mobility; and transition from 

manual occupant-propulsion to a powered wheelchair. 

In the first of these, the concern arises in the determination of people who 

have had polio to retain independence. Polio survivors will have been 

encouraged during their acute illness to do all that they can to live a ‘normal 

life’, often with great success over many years. Against this background 

transition to using a wheelchair or other additional mobility aids may be seen 

as a defeat and be difficult psychologically. The psychological effects may 

require professional support. However, wheelchair mobility in many cases 

needs less energy than walking, especially walking with a grossly impaired 

gait. Wheelchair use can also spare the strain on joints in the legs (although 

there can be demands on upper-limb joints). Thus with advancing muscle 

weakness, joint degeneration, or declining exercise tolerance, transition to 

wheelchair use can be a positive move, allowing more social activity. A 

further issue is people who fall frequently, for whom a wheelchair can be 

much safer. However, health professionals advising such a change need to 

be sensitive to the anxieties that someone with polio may experience at this 

point. 

As post polio progresses, however, manual occupant-propulsion can give rise 

to its own problems. Weakness and poorer exercise tolerance may make 

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manual propulsion hard, especially when the weakness is in arm or trunk 

muscles. In these circumstances, some authorities believe muscle weakness 

could be accelerated by manual propulsion. Joints in the arm (especially the 

shoulder) can become painful, and arthritic conditions can deteriorate. 

Powered wheelchairs may then become necessary. 

Relatively recently, some accessories have become available to give power 

assistance to a manual wheelchair. These can reduce some of the strain of 

propulsion but do not have the performance and range of a full powered 

wheelchair. There is a wide and bewildering variety of designs available to 

meet the wide range of individual mobility requirements. These extend from 

small compact designs intended for use only indoors, to large complex high 

performance (and expensive) designs intended to tackle outdoor 

environments. Powered wheelchairs can also have additional powered 

features, such as seat tilt or recline, or elevating leg rests. More complex 

designs may have powered elevating seats to allow access to high tables or 

shelves. These features may allow longer tolerance of the sitting position or 

increase independence. If the user cannot manage a standard joystick hand 

control, a variety of special controls can be fitted, though these are rarely 

successful in outdoor environments. 

In addition the use of scooters has become popular for people who can walk 

indoors but require power assistance with outdoor mobility. 

► It is strongly recommended that people seek professional advice 

in selecting the optimum wheelchair. This can be obtained from 

NHS, Local Authority advice centres, or accredited dealers. 

Wheelchair users then need to consider how they can obtain the required 

wheelchair. Sources may be statutory (NHS), charitable or private. NHS 

provision of powered wheelchairs has to date been limited to those unable to 

walk or propel themselves indoors manually. Post polio survivors have 

reported feeling disadvantaged by this, as they may be able to walk short 

17



distances, but fatigue rapidly and some are concerned that continued 

occupant-propulsion can be harmful. In fact, NHS powered wheelchair 

prescription is possible if it is medically inadvisable for the individual to 

manually propel themselves. The conditions for NHS provision in Scotland 

are currently under review. In addition equipment to preserve employment, 

including powered wheelchairs where appropriate, can sometimes be funded 

by the Department of Work and Pensions ‘Access to Work’ scheme. Some 

charities may also provide help with the purchase of powered wheelchairs. 

Wheelchairs can have a major effect in assisting the post polio survivor to 

prolong their independent mobility, but need careful selection to ensure the 

appropriate wheelchair is chosen. 

It should be recognised that other forms of assistive technologies may be of 

value to polio survivors (see Annex G). 

2.5 Respiratory and sleep services 

There is general agreement concerning the nature of the potential respiratory 

aspects of PPS and LEOP. These can be divided into three broad groups; 

• Sleep disorders – obstructive sleep apnoea, central sleep apnoea, 

nocturnal hypoventilation, sleep related abnormal muscle movements, 

sleep disruption due to musculoskeletal discomfort. 

• Respiratory insufficiency – hypercapnic respiratory failure due to 

respiratory muscle weakness and chest wall distortion. 

• Impaired sputum clearance – weak cough and poor protection of 

upper airway. 

The questions which arise are: 

• Frequency of each type of respiratory problem. 

• Relevance of respiratory symptoms to a diagnosis of PPS/LEOP. 

• Predicting the pace and pattern of progression. 

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• Success of interventions. 

• Appropriate infrastructure of respiratory care. 

2.5a Frequency of respiratory problems 

As with other post polio symptoms, there is a wide range reported in the 

literature for respiratory symptoms. Farbu et al 13 , in a series of 85 patients 

found 20% had some impairment of peak expiratory flow, but only 2% had 

dyspnoea. The Queensland Review 14 reported new breathing difficulties in 

39% of subjects. An EFNS task force review 12 concluded that whilst 

shortness of breath was a common symptom, respiratory function was often 

normal and symptoms could be explained by cardiovascular deconditioning 

and weight gain. 

2.5b Sleep problems and PPS/LEOP 

The incidence of sleep problems related to PPS/LEOP is similarly difficult to 

estimate but all reviews indicate a number of reasons why sleep problems 

might be commonly encountered: 

• Obstructive sleep apnoea – imposed sedentary lifestyle with weight 

gain, bulbar weakness. 

• Central sleep apnoea – residual dysfunction of bulbar reticular neurons. 

• Abnormal muscle movements – periodic leg movement in sleep [PLMS]. 

• Musculoskeletal discomfort causing sleep fragmentation. 

2.5c Relevance of respiratory symptoms to a diagnosis of PPS/LEOP 

No respiratory symptoms described in literature are specific to PPS/LEOP. 

Respiratory involvement is indicated from the overall clinical picture with 

‘alerts’ being: 

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► Risk factors: initial respiratory problems, late age of acute polio and 

possibly very good recovery pattern. Significant kyphoscoliosis, 

suspicion of bulbar involvement. 

►Sleep aspects: disrupted sleep in conjunction with daytime 

hypersomnolence (elevated Epworth score) and poor concentration. 

Worsening snoring. 

►Hypoventilation: new orthopnoea, and/or morning headache, ankle 

swelling. 

►Respiratory muscles: dyspnoea on exertion or rest without obvious 

cardiorespiratory cause. 

►Expiratory muscles/bulbar: poor clearance of bronchial secretions 

and/or repeated chest infections. 

(Adapted from Queensland Review 14 ) 

Very rapid onset of respiratory muscle weakness causing respiratory failure 

is conceivable as a first clinical presentation but other muscle involvement is 

inevitably present and expert neurology assessment would be required for 

confirmation. The presence of any of the alerts above should lead a 

neurologist to consider a respiratory assessment. 

►Any of the following should alert respiratory physicians to 

consider PPS/LEOP: 

• History of polio. 

• Mixed sleep problems especially if there is a component of central 

sleep apnoea or a poor response to initial therapy. 

• Unexplained weak cough or aspiration pneumonia. 

• Lower limb weakness in patients with chest bellows impairment. 

20



2.5d Predicting pace and progression – relevant tests 

There is general agreement that the more severe the respiratory involvement 

during acute poliomyelitis, and the older when affected, the likelier are late 

respiratory difficulties. 

Evidence about respiratory testing is garnered from case series and large 

centre experience. There appears to be no convincing evidence of any more 

rapid lung function decline in post polio populations than normal. Midgren 15 , 

the EFNS review 12 and data from the Lane Fox Unit 16 have all suggested that 

sleep studies could more sensitively identify patients who are likely to require 

intervention than standard lung function tests. 

Based on these data, the group suggests the following approach in post polio 

patients with respiratory symptoms: 

►As in any respiratory problem, a measurement of vital capacity (VC) 

and an arterial blood gas sample [if oxygen saturation

2.5e Success of interventions 



There is good evidence that respiratory insufficiency relating to PPS/LEOP 

can be very successfully treated with modern NIV techniques, achieving long 

term control, usually from treatment restricted to night time use. The only 

caveat is that tracheostomy may be required in the presence of severe bulbar 

involvement with secretion management problems and reduced NIV 

tolerance. NIV should be readily accessible to all post polio patients with 

relevant sleep breathing and respiratory muscle problems. Sleep problems 

not related to a sleep breathing aetiology are more variable in response but 

good communication between sleep medicine and other specialist inputs is 

likely to optimise clinical outcome. 

The EFNS review 12 supports a role for respiratory muscle training and, on 

balance, efforts to maintain respiratory muscle function seem reasonable. 

Finally, best practice for respiratory care requires facilities for aggressive 

secretion management where required, i.e. physiotherapy input with a range 

of cough assist techniques and links to speech and language therapy. 

22

2.5f Key points 



►New respiratory symptoms are common in the context of 

PPS/LEOP but many will relate to non polio aetiologies. 

Initial lung function is important in predicting need for active 

respiratory support (NIV). 

►Serial lung function testing is only helpful in context of the emerging 

clinical picture. 

►Sleep breathing studies are the most sensitive predictor for future 

NIV. Sleep medicine is an important element in the care of patients 

with LEOP. 

►If breathlessness is the only respiratory symptom and a local VC 

measurement is normal no further respiratory input is required unless 

there is a change in clinical picture. 

►If the patient has a range of symptoms (most commonly sleep 

breathing abnormality or sleep disruption) referral to a respiratory unit 

with sleep medicine facilities is indicated with sleep studies and 

respiratory muscle tests as previously outlined. Sleep breathing 

centres are equipped to provide the appropriate type of support 

►If there is very severe respiratory failure with secretion clearance 

problems the sleep centre should refer the patient to a regional 

complex assisted ventilation service. 

2.6 Pharmacology and pharmacy 

There is debate over whether individuals with PPS/LEOP have an increased 

sensitivity to anaesthetic and muscle relaxant drugs 14 . All polio survivors 

should be viewed as having an increased risk of needing post operative 

ventilatory support due to unrecognised respiratory muscle involvement in the 

acute attack and/or undiagnosed PPS. 

There is no evidence that polio survivors have an increased propensity to 

muscle damage from the statin group of drugs. However, it is particularly 

important that implementing statin therapy in this population is based on an 

23



assessment of reduction of overall cardiovascular rather blood lipid results in 

isolation. Any evidence of developing muscle damage in polio survivors on a 

statin should normally lead to withdrawal of the drug while the cause is 

evaluated. 

Polio survivors who develop swallowing difficulty will benefit from pharmacy 

assistance in establishing the best formulations for their drug therapies. 

2.7 Lymphoedema (see annex D for more detail) 

In people with PPS/LEOP, lymphoedema can occur for various reasons and 

often a combination of several: 

• The muscle pump action required to move fluid may be compromised if 

the muscles are weak, the natural walking movement is affected, or the 

limb is dependent. 

• Increased capillary filtration can occur as a result of trauma (e.g. an ulcer 

due to callipers, or other injury), infection, vein problems, or as an effect of 

certain medications. 

• A primary insufficiency of the lymphatic system may be present but can be 

difficult to diagnose without investigations. Also the lymphatic system 

becomes less efficient with ageing and with weight gain. 

• Other medical problems such as right heart failure or liver disease can 

contribute to swelling. 

Lymphoedema can be well controlled although it does not usually completely 

resolve. Early recognition of the signs of lymphoedema allows self 

management approaches and relevant specialist treatments to be started. 

This can minimise the risk of further complications such as infection which 

can be severe and require hospitalisation. 

24



Referral to a lymphoedema specialist is advised so self management advice 

and support can be given. However, access to services is varied and 

lymphoedema clinic provision is not standardised in Scotland. 

A course of intensive treatment may be required if the swelling is severe and 

persistent, the limb shape is distorted, or the skin is in a poor condition. 

Further referral to relevant services such as the vascular specialist may be 

indicated for some people. 

The lymphoedema needs of people with PPS/LEOP should be kept in mind 

by SMASAC as part of its current scoping work on the condition. 

2.8 Orthotic services 

Concern about the availability and standard of orthotic services has been a 

key feature of many of the group’s discussions. The SPPN conducted a 

review of some of its members’ experiences of orthotic services which 

provided anecdotal evidence that these were often less than ideal. This has 

been supplemented by personal testimonies from some of the group’s 

members and their acquaintances. Similarly, BPF conducted a review of 

patient experiences of using the NHS orthotics service in part to inform the 

NHS Orthotics Panel and help gather information that could help to improve 

the service to BPF members and to orthotics users generally. Specific 

objectives were to explore: 

• What orthoses are used. 

• How the process works for users, in terms of waiting times, 

consistency of the team that treats them, etc. 

• How users feel the service should be improve. 

A summary of the findings of the review is included at Annex E. 

25

2.8a Orthotic services in Scotland 



Strathclyde University is one of only two in the UK providing a Masters degree 

in Prosthetics and Orthotics, with an intake currently of 30 students per year. 

The orthotic management of polio survivors is covered in some detail in the 

undergraduate programme. However, because of the relatively small number 

of polio survivors with orthoses in regular contact with orthotic services, each 

individual orthotist may see post polio only occasionally. 

2.8b Patient groups 

From the orthotic management point of view, there are three main groups of 

patients whose needs should be considered. Broadly, these are: 

• People already in the orthotic system who are going through the process 

of assessment/fitting of orthosis or regular review. 

• People who are known to their local service but may not have been 

reviewed for some time and may benefit from a review of their needs. 

• People who are not known to the orthotic service and do not currently use 

an orthosis, but who may now benefit from assessment. 

In considering these groups, a number of questions arise: 

• If individuals are not being seen regularly by the orthotic service, are they 

being seen by anyone? If so, are other AHPs aware of how and when to 

refer to orthotics? 

• How would we best reach the group who are currently not known to the 

system, bearing in mind that a number will have some psychological 

resistance to seeking ‘help’ for a condition that they may regard as 

something they just have to cope with? Is there sufficient awareness 

among polio survivors of the potential for late effects to develop? 

26



• What is the level of unmet need, both in patients who could benefit from 

review and patients who are unknown to the service, and what would be 

the impact on the service if more people come forward for assessment 

and review? 

2.8c Pathways into the orthotic service 

‘New’ patients reach orthotics mainly by referral from orthopaedics, and may 

or may not have had surgery. GPs cannot currently refer directly to orthotics. 

Patients known to the system can self-refer, and traditionally would have 

done, although this is becoming less common. There are not well-developed 

referral criteria into orthotics for assessment, so there may discrepancies in 

treatment and management, e.g. surgery or orthotic management. Direct GP 

referral to orthotics could result in an unmanageable number of new 

assessments which the service would not be able to cope with. However, if 

good quality advice and guidance could be developed for GPs to avoid 

inappropriate referrals, this could be valuable in the future. 

The development of best practice guidance for qualified orthotists would be 

welcome. There are established channels for the dissemination of guidance 

to orthotists working in Scotland. As a result of the recent Orthotic Review, 

each NHS Board is required to identify an Orthotic Manager to take forward 

the recommendations of the review. 

Many of the difficulties in orthotic provision are not unique to PPS/LEOP. A 

recurrent comment in surveys of orthotics users is that it would be more 

efficient for all concerned if there could be a longer initial consultation which 

resulted in a well fitted and suitable orthosis rather than a series of shorter 

visits and serial modifications. 

27

Section 3 – Service model options 



3.1 Status quo 

Problems with the current configuration and availability of services are mainly 

related to awareness of the condition and the uncoordinated development of 

services across the country. Responses to a 2005 petition by the SPPN 

indicated a range of awareness and knowledge of PPS among organisations 

and NHS Boards. It was accepted by the Chief Medical Officer (CMO) that 

although recognition of PPS by the medical profession had improved, 

recognition and awareness of the syndrome could be patchy, leading to 

variance in how quickly individuals may be diagnosed and appropriately 

referred. 

3.2 Augmentation of informal network of interested clinicians 

The SPPN has compiled a list of ‘interested clinicians’, which is available on 

their website and supplied to individuals who contact SPPN. The Network 

continues to encourage awareness and interest in PPS/LEOP among 

clinicians, but this is likely to progress only slowly and will be focused largely 

at consultant level in specialty areas such as neurology, respiratory medicine 

or orthopaedics, where, generally speaking, awareness is less of an issue. 

As the SPPN has identified, problems in accessing help and advice are more 

likely at the earlier stages of recognition and treatment: in general practice, 

physiotherapy and occupational therapy particularly. Since at this level of 

primary and/or community care, individual professionals are likely to see only 

a very few polio survivors in their day to day practice, encouraging greater 

awareness of patient needs by way of an informal network is likely to be more 

of a challenge. There will also be a role for the Community Health 

Partnerships (CHPs), both because they are likely to cover a larger number of 

people with PPS/LEOP but also because of their links to NHS Boards’ local 

planning partners, which help to integrate people’s health and social care, 

along with other needs such as housing. This approach will be promoted by 

essential criterion 4.8 of the NHS QIS neurological standards, which is that 

the local neurology service has channels of the communication with the 

28



individual responsible for long term conditions in the local CHP or equivalent, 

to co-ordinate the provision of services, equipment and medication by NHS 

and social services. 

While having identified specialists with an interest in PPS will be of assistance 

in guiding referral to those individuals, the lack of structure and identified aims 

and objectives in an informal network is likely to mean that there will be little 

influence over current service design and development, and change will 

happen only slowly. Additionally, opportunities for sharing experience and 

best practice are unlikely to be maximised. 

3.3 Establishment of a formal Managed Clinical Network (MCN) 

Managed Clinical Networks (MCNs) were first introduced as a concept in the 

Acute Services Review of June 1998 and this was followed by a Management 

Executive Letter (MEL) (1999) 10, which defined MCNs as: 

“linked groups of health professionals and organisations from primary, 

secondary and tertiary care, working in a co-ordinated manner, unconstrained 

by existing professional and health boundaries, to ensure equitable provision 

of high quality clinically effective services throughout Scotland”. 

MCNs have since developed for a number of patient groups, from those with 

small numbers and very specific needs (such as home parenteral nutrition) to 

more common, long-term conditions (such as stroke or diabetes). MCNs can 

be organised on a national, regional or local basis, the main determinant 

generally being patient numbers. 

The common aim of MCNs is to facilitate the improvement and consistent, 

equitable delivery of services to people whose condition means that they 

require multi-disciplinary care which may involve primary, secondary and 

tertiary services and a range of clinical and AHP specialties. They also give a 

strong voice to patients and the voluntary sector organisations that support 

them. All MCNs should operate according to a recognised evidence base, 

and usually act as a vehicle for the development of standards, to promote 

29



consistency of services. Managed Care Networks have been developed for 

conditions where there is a particular need to integrate people’s health and 

social care needs. 

Funding is generally allocated to a MCN to cover its administrative costs (a 

Network Manager, who may be responsible for more than one MCN), and the 

cost of backfill for a defined number of clinical sessions to ensure the clinical 

leadership of the MCN. Each MCN is then expected to detail its objectives 

and produce a yearly report to demonstrate its progress against these, and 

after its initial establishment phase, to demonstrate that it contributes to 

measurable improvement in patient care. 

The provision of administrative resource and a defined clinical lead with a 

recognised allocation of time for network activities would undoubtedly assist 

in taking forward improvements to the current services for people with 

PPS/LEOP. The numbers involved suggest that the development of an MCN 

approach would need to be at regional level, and taking that forward would 

require further discussions with the Regional Planning Groups. Additionally, 

the care needs of people with PPS/LEOP may not be seen as sufficiently 

dissimilar to those of patients with other neurological long term conditions, to 

merit the establishment of a single condition MCN. 

3.4 The role of specialist centres 

As already noted, the complexities of PPS/LEOP often require a 

multidisciplinary approach. At present a patient can be seen in a variety of 

clinics, often at different locations. This is time consuming and can lead to 

failure of integration of the various elements. 

One potential solution is to establish one or more specialist centres where all 

the necessary disciplines are present. Such centres have been established in 

England (London, Liverpool and Newcastle), Ireland (Dublin) and the USA 

(Warm Springs). The advantages of co-locating services are clear, 

particularly for those individuals with complex needs. However, many polio 

30



survivors have needs which can be met locally without them having to travel 

to a specialist centre. There is a risk that establishing a specialist centre 

would reduce provision of some local services. As yet, there appears to be 

little cost/benefit analysis on the overall value of specialist centres. 

Any proposal to establish one or more such centres in Scotland would need 

rigorous evaluation, bearing in mind the relatively small number of individuals 

who might benefit and the widely dispersed nature of the patient population. 

Comparison would also need to be made against other ways of integrating 

services better, such as a Managed Clinical Network. 

3.5 Summary of service model options 

Maintaining the status quo appears to be unacceptable. At the very least, the 

group recommends that consideration should be given to strengthening local 

services as part of the process of taking forward the NHS QIS Implementation 

and Improvement Support Plan for its clinical standards for neurological 

health services. The group also recommends that there should be 

discussions with the Directors of Regional Planning about the feasibility of 

developing a Managed Clinical or Care Network approach to PPS/LEOP 

services. 

31



Section 4 – Role of the voluntary sector 

4.1 Scottish Post Polio Network 

The fact that a SMASAC working group was convened to make 

recommendations around the provision of services for people experiencing the 

late effects of polio is due mainly to the efforts of the Scottish Post Polio 

Network. Formed in 2001 by a small group of polio survivors who had 

experienced various problems in accessing advice, support and/or treatment to 

help with their new healthcare needs, it began to raise awareness of the 

condition among health professionals and polio survivors themselves, many of 

whom were unaware that the problems they were experiencing could be related 

to childhood polio. The Network began to build its membership, to share advice 

and guidance from other international sources and to campaign for action to 

raise the profile of PPS/LEOP, and in 2005, took its campaign to the Scottish 

Parliament. Following on from this, representatives from the SPPN met with 

the Deputy Chief Medical Officer and the head of the Long Term Conditions 

Unit late in 2007 to discuss setting up this SMASAC working group, the full 

membership of which is included at annex H. 

During the course of this work, the SPPN and SGHD have worked together on 

a public awareness campaign, with good results, and on redeveloping the 

Network’s website. The SPPN continues to act as a source of advice for new 

and existing members, other polio survivors and their families, and continues in 

its work to build a network of interested clinicians. 

4.2 British Polio Fellowship 

Throughout this work, the group has also had contact with the British Polio 

Fellowship (BPF), a national charity with an obvious interest in services for 

people with PPS/LEOP. The BPF benefits from a much more established 

organisational structure, full time staff and a larger membership. It is therefore 

more readily able to fund research, marketing and development work, and to 

have a strong voice in policy development. There were clearly many issues in 

common between the groups; both were concerned with raising awareness 

32



among polio survivors and health professionals, were considering the 

development of UK-specific guidance in some form, and were looking to 

improve the processes by which polio survivors are referred, or self-refer, to the 

services appropriate to their specific needs. 

Other organisations 

The Pain Association Scotland runs staff-led monthly self management groups 

throughout Scotland, in many cases as part of a service agreement with NHS 

Boards. Clinicians caring for those with PPS/LEOP should bear in mind the 

benefits which might accrue from referral to such a group. 

Pain as a symptom of PPS/LEOP should benefit from the work currently being 

undertaken by the Scottish Government’s Lead Clinician for Chronic Pain in 

developing a service model for pain management in Scotland, linked closely to 

the work on musculo-skeletal services being taken forward as part of the 

process of implementing the Framework for Adult Rehabilitation. 

Assist UK, also known as AIMS, leads a UK wide network of locally-situated 

Disabled Living Centres. Each centre includes a permanent exhibition of 

products and equipment that provide people with opportunities to see and try 

products and equipment and get information and advice from professional staff 

about what might suit them best. Assist UK also offer training courses linked to 

services provided by members. There are five disabled living centres in 

Scotland (in Dundee, Edinburgh, Elgin, Paisley and Stirling) providing specialist 

information on aids and equipment as well as other disability related enquiries. 

In view of the importance to people living with PPS/LEOP of maintaining their 

independence, information should be made available to them, either from 

healthcare professionals or through the SPPN, about the availability of self 

directed support. That funding allows people to determine their own care 

package and, if they so wish, to employ people to deliver it. 

33

Section 5 – Recommendations 



5.1 Remit 

At its first meeting, the group considered and accepted the following remit: 

To report to SMASAC on the following issues relating to PPS and LEOP: 






approach to the provision of services. 

The group’s recommendations in these four key areas are as follows. 

5.2 Defining the condition 

The definition of PPS, as detailed in the NINDS criteria (Annex A) is widely 

accepted. For the wider term ‘late effects of polio’ the group recommends that 

the operational definition as proposed by the Queensland Review 14 is 

accepted, to describe symptoms arising from: 

• Musculoskeletal imbalance. 

• Growth retardation. 

• Skeletal deformities of affected limbs. 

• Respiratory insufficiency. 

• Cold intolerance due to circulatory disturbances. 

This list is not exclusive and symptoms consequent on the deficit following 

polio may be added. These would include entrapment neuropathies related 

to alterations of posture and can occur at any time after the initial poliovirus 

infection. 

34



The development of new symptoms in an individual considered to have had 

polio may be due to PPS, LEOP, or the development of an unrelated health 

problem. It is the remit of primary care to interpret symptoms and refer on to 

the appropriate professional. New weakness should ideally generate a referral 

to neurological services whose skills and resources are essential to make a 

diagnosis of the cause of new weakness. 

Presence of any of the following in an individual considered to have had polio 

should prompt consideration of PPS/LEOP: 

• Falls. 

• New pain in an area not previously affected. 

• New or evolving wasting. 

• Sensory symptoms such as tingling or numbness especially in a 

discrete area (for LEOP only). 

• New dysphagia. 

• The development of more than one respiratory infection in 12 

months requiring antibiotics. 

• Any fracture. 

As noted in Section 2.10, individuals with PPS/LEOP who develop respiratory 

symptoms must have appropriate assessment, including exclusion of other 

causes. Those who have polio related respiratory problems and a significantly 

reduced vital capacity will require access to sleep studies and may need non 

invasive ventilatory support. 

5.3 Determining the prevalence of PPS/LEOP in Scotland 

As described earlier in this report, there would be considerable difficulty in 

establishing a more accurate estimate of prevalence than that which is 

currently available based on existing literature. The group therefore 

recommends, for planning purposes, that the prevalence of PPS/LEOP in 

Scotland is accepted as between 1,000 and 6,000 individuals. 

35



5.4 Raising awareness of the condition, especially in primary care, through 

adaptation for Scotland of existing guidance 

In its consideration of how best to raise awareness of PPS/LEOP in primary 

care, the group concluded that focusing on individual GPs was unlikely to yield 

much benefit in return for the considerable resource that would be required to 

produce and distribute educational information to each practice. 

However, it was agreed that there would be considerable benefit to educating 

polio survivors about PPS/LEOP and empowering them to have the confidence 

and knowledge to approach their GP with relevant and reliable information. 

During the work of this group, the BPF has produced a booklet on PPS 17 for 

exactly this purpose, which gives a clear and informative introduction to PPS 

and its management. Informal feedback from the Irish Post Polio Network, 

where a similar guidance booklet has been available for some time, indicates 

that patient empowerment and promotion of confidence has been its main 

benefit. There would seem to be little additional benefit to be gained by 

developing a separate publication for Scottish polio survivors, though SGHD 

may wish to consider this. 

• The group recommends that the BPF publication on PPS 17 be made 

widely available to polio survivors and health professionals in 

NHSScotland. The Queensland Review 14 should also be made readily 

available. 

• For general practitioners, it was agreed that a simple description of referral 

pathways would be the most useful tool that could be provided. This 

already exists in the form of the NHS Direct ‘Map of Medicine’ (MoM) 

pathway for PPS (see Annex F). However, MoM is not in use in 

NHSScotland and SGHD should consider whether this particular pathway 

could be adopted by NHSScotland in a similar way. 

36



It was also recognised by the group that even where individuals and primary 

care practitioners may be aware of PPS/LEOP, there is little knowledge of 

how and where to refer, particularly to services such as physiotherapy, 

community nursing and occupational therapy. Self-referral is, in most cases, 

possible. However this does not seem to be widely known and the group 

feels that polio survivors should have a source of information which details 

self-referral policy and procedure for the range of community-based 

assessment services in their area. 

• Information on self-referral policy and process for community nursing, 

occupational therapy and physiotherapy services should be collated and 

made available via the SPPN website. Practitioners receiving self 

referrals should ensure that the polio survivor’s GP receives relevant 

information. 

For some services, it was agreed that more specific guidance for healthcare 

professionals may be useful. It was accepted that the extent and quality of 

the evidence base for this guidance would not be sufficient for a Scottish 

Intercollegiate Guidelines Network (SIGN) guideline or equivalent, but that 

Best Practice Guidelines (BPGs) would be helpful. These would be 

particularly useful to physiotherapy, where there has been varying advice on 

treatment options, and orthotics, where services have historically been underresourced 

and inconsistently delivered. It was also recognised that there may 

be significant unmet need for orthotic review in the polio survivor population 

and further attempts should be made to quantify this, since the service was 

unlikely to be able to meet a sudden increase in demand without adequate 

planning and additional resource. 

• HIS should be asked to consider the development of BPGs for the 

treatment of PPS/LEOP for physiotherapists and orthotic service 

providers. 

37



5.5 Considering the potential benefits of a Managed Clinical Network 

approach to the provision of services 

The needs of polio survivors with PPS/LEOP are complex and require input from 

a variety of clinical and social services. A MCN could be of benefit by formalising 

and strengthening the work of the “interested clinicians” and by allowing 

experience and examples of good practice to be shared. Many of the issues 

faced by polio survivors are similar to those in other long term neurological 

conditions. The Regional Planning Groups should be asked to consider 

establishing a MCN for PPS/LEOP alone or in conjunction with other conditions 

whose patients have similar needs. 

SGHD should ensure that the needs of those with PPS/LEOP are kept in mind 

during the process of implementing the NHS QIS clinical standards for 

neurological health services, especially through the work of the local neurological 

services improvement groups which are being set up in each NHS Board. SGHD 

should also make sure that NHS Boards’ long term conditions executive 

sponsors are made aware of the recommendations in this report. 

38

Abbreviations 



BPF British Polio Fellowship 

BPG Best Practice Guideline 

CHP Community Heath Partnership 

CMO Chief Medical Officer 

EFNS European Federation of Neurological Societies 

GP General Practitioner 

HIS Health Improvement Scotland (from 1 April 2011) 

LEOP Late effects of polio 

MCN Managed Clinical Network 

MEL Management Executive Letter 

MoM Map of Medicine 

NHSQIS NHS Quality Improvement Scotland 

NINDS National Institute for Neurological Disorders and Stroke 

(USA) 

NIV Non invasive ventilation 

OT Occupational therapy 

PaCO2 Arterial carbon dioxide partial pressure 

PPS Post polio syndrome 

SaO2 Arterial oxygen saturation 

SGHD Scottish Government Health Directorates 

SIGN Scottish Intercollegiate Guidelines Network 

SMASAC Scottish Medical and Scientific Advisory Committee 

SPPN Scottish Post Polio Network 

VC Vital capacity 

39



Annex A – NINDS diagnostic criteria for Post Polio Syndrome 

NINDS set out the following as diagnostic criteria: 

• Prior paralytic poliomyelitis with evidence of motor neuron loss, as 

confirmed by history of the acute paralytic illness, signs of residual 

weakness and atrophy of muscles on neuromuscular examination, and 

signs of nerve damage on electromyography (EMG). Rarely, persons 

have subclinical paralytic polio, described as a loss of motor neurons 

during acute polio but with no obvious deficit. That prior polio now needs 

to be confirmed with an EMG. Also, a reported history of nonparalytic 

polio may be inaccurate. A period of partial or complete functional 

recovery after acute paralytic poliomyelitis, followed by an interval (usually 

15 years or more) of stable neuromuscular function. 

• Gradual onset of progressive and persistent new muscle weakness or 

abnormal muscle fatigability (decreased endurance), with or without 

generalised fatigue, muscle atrophy, or muscle and joint pain. Onset may 

at times follow trauma, surgery, or a period of inactivity, and can appear to 

be sudden. Less commonly, symptoms attributed to PPS include new 

problems with breathing or swallowing. 

• Symptoms that persist for at least a year. 

• Exclusion of other neuromuscular, medical and orthopaedic problems as a 

cause of symptoms. 

40

Annex B – Prevalence estimates 



There are several studies which have aimed to quantify the prevalence of PPS in 

polio survivors, using a variety of different study methods. Results are 

summarised below: 

Author (country 

and year of study) 

Proportion of polio 

survivors found to have 

developed PPS 

Study notes 

Gilhus (Norway 1998) 15% 

Takemura et al (Japan 

2004) 

85% Questionnaire survey 

Halstead et al (USA, 

1983) 

42-87% Questionnaire survey 

Ahlstrom (Sweden, 1993) 20-80% Medical records review 

Halstead & Rossi (USA, 

1987) 

75% Clinical study 

Codd et al (USA, 1985) 22.4% of paralytic cases Questionnaire survey 

Windebank et al (USA, 

1995) 

60% Clinical study 

Ramlow et al (USA, 

1992) 

28.5% of paralytic cases Questionnaire survey 

Variation in the findings may be due in part to the differences in study methods 

and the selection of the studied groups. Risk factors identified as associated with 

the development of PPS include: greater severity of illness at acute phase, 

greater recovery after acute phase, older age at time of acute phase, permanent 

impairment after recovery, female gender, longer time interval since acute phase, 

and possibly, increased physical exercise (Trojan & Cashman, 2005). 

Some of these, and other studies, have estimated the population prevalence of 

PPS, or of polio survivors in the population. These include: 

Gilhus, 1998 (250 per 100,000 population polio survivors) 

Takemura et al, 2004 (18 per 100,000 population PPS) 

Ahlstrom et al, Sweden (186/100,000 population PPS) 

Halstead (1995) (269 per 100,000 polio survivors) 

Lonnberg, 1993 (157 per 100,000 population PPS) 

41



Pentland et al (1999) used the studies above to assume a prevalence of 200 per 

100,000 population polio survivors and a population of .75 million in Lothian. 

This would give an estimate of around 1,500 polio survivors in Lothian and, if 

extrapolated to the whole of Scotland population of 5.1 million, 10,200 polio 

survivors in Scotland. 

If Pentland’s conservative figure of 20% of these individuals go on to develop 

PPS, that would indicate 2040 individuals in Scotland. However, this is based on 

extrapolation from previous studies and it is not clear how applicable the findings 

of these may be to the Scottish population. 

What we do know about polio incidence in Scotland is derived from notified 

cases. There were 6792 notifications of polio in the period 1934 to today. We 

also know how many people died in this period with a cause of death recorded as 

acute poliomyelitis, and if we assume that deaths in this period occurred in 

individuals notified in the same period, this brings the notified cases down to 

6203. 

These data have some limitations; we do not know how old these individuals 

were at the age of onset, but given that the notifications go back to 1934 we can 

be sure that this includes everyone up to at least 73 years of age today, whose 

polio was notified to the health authorities. We do not know the extent of underreporting, 

which raises some questions about how many more polio cases might 

have occurred in this period that are not captured in these data. We could 

possibly assume that some milder cases may have been treated at home, but 

quantifying this may be difficult. This figure of 6203 also does not take into 

account deaths from other causes during the intervening years, or migration into 

or out of Scotland. 

If we were to assume that the notifications above represent all the paralytic cases 

(which are the most likely to go on to develop PPS) and that all of the individuals 

identified as having survived the acute phase are still alive, that would give us a 

prevalence of 121 per 100,000 population polio survivors in Scotland. Using a 

42



figure of 20% of these individuals going on to develop PPS, we could expect 

there to be 1,240 individuals affected by PPS in Scotland today, or 24 per 

100,000 population. 

Since PPS most commonly develops 2-4 decades after acute phase and the last 

major epidemic occurred in 1958 we can safely assume that the current cohort, 

once identified, will not increase significantly. 

Based on other studies and what records we have, the likely number of polio 

survivors in Scotland today is probably between 6,000 and 10,200. The table 

below illustrates the total numbers with PPS for a range of proportions of the 

cohort who may have PPS, from 20% to 60%. 

Possible prevalence of PPS in Scotland based on different numbers of 

polio survivors and proportions developing the syndrome 

Proportion of 

people 

developing 

PPS 

Number of polio survivors 

6000 7500 9000 10200 

20% 1200 1500 1800 2040 

30% 1800 2250 2700 3060 

40% 2400 4500 3600 4080 

50% 3000 3750 4500 5100 

60% 3600 4500 5400 6120 

43



Annex C – Report from Scottish Public Health Network 

Potential for surveillance 

In seeking to consider the potential for surveillance for post-polio syndrome and 

achieve a more accurate picture of prevalence, the first issue to be addressed is 

that of case definition. This is not as straight-forward as it may seem. For 

example, whilst PPS is usually described as a condition that affects polio 

survivors some years after recovery from the initial acute phase of poliomyelitis, 

actual diagnosis is based on a medical assessment of a patient against set 

criteria (such as the criteria set out by NINDS). 

Even applying such criterion based approaches can be prone to a high degree of 

variability as a consequence of either the spectrum of residual weakness 

experienced by people with PPS or by the number and complexity of presenting 

co-morbidities. 

The variability in reported estimates of PPS prevalence derived from research 

studies described above are clear evidence of these difficulties in case definition. 

Describing PPS in data recording systems 

One of the immediate consequences of this requirement for a PPS diagnosis on 

the basis of a medical assessment against criteria is that the condition is very 

hard to identify in existing, routine data systems of the type used in Scotland. 

Whilst coding conventions for PPS do exist within – for example – the WHO 

International Classification of Diseases (10 th Revision 2007) includes codes for 

the sequelae of poliomyelitis – their use and recording within data sets is 

variable. Where a definite diagnosis has been made, it may be recorded 

centrally on either GP systems or in hospital out-patient records. However, 

alternative codes which reflect more fully the presenting illness or concern may 

also be used. 

44



Linking clinical datasets 

One clear possibility for some form of records linkage would be to use all existing 

healthcare records to identify those individuals with any diagnosis of “polio”, and 

then use General Registrar’s Office for Scotland death registrations data to 

confirm those still alive. From there, specific reviews could be undertaken via 

their existing medical practitioners. Whist this approach has its attractions, the 

potential complexities of seeking approval to use such data sets for this type of 

purpose cannot be under-estimated. The ethics of such an approach would also 

require careful consideration. 

The potential for using only medical records linkage approaches to the 

identification of people with PPS has been explored with the Information and 

Statistics Division of NHS National Services Scotland (ISD). Two general 

approaches have been considered. 

The first is based on a forward linkage, using an initial identification of an 

individual as having suffered from acute, paralytic poliomyelitis. Using the 

NINDS definition a basis for a matching algorithm, it may be possible to identify 

those for whom after at least 15 years, health care records show symptomatic 

presentations / investigated conditions which may be associated with PPS. 

These would have to exist without any alternative, substantive diagnosis based 

on similar presenting symptoms. These would need to explore both Scottish 

Morbidity Records (SMR) and GPASS records. 

The second approach explored was a backward linkage, based on an algorithm 

which explored SMR and GPASS records for symptomatic presentations which 

were used to then track back through records for confirmation of previous acute, 

paralytic poliomyelitis and no evidence of other possible diagnoses. 

The view from ISD was that while such linkage algorithms could be technically 

possible, they were unlikely to be effective ways of identifying cases. Leaving 

aside the potential for error associated with the variable quality of older data set, 

the complications of changes in coding conventions or of the simple availability of 

45



data in computerised formats, the absence of sufficiently well defined criteria for 

describing the constellation of symptoms of interest would be highly problematic. 

Defining the symptoms too loosely would provide for a very large number of false 

matches that would have to be excluded. Setting too narrow a set of parameters 

would exclude potential cases of interest. 

It was also noted that confirmation of a diagnosis of PPS would always have to 

be undertaken on the basis of a medical opinion, even if the focus was being 

identified from computerised data. 

Establishing disease registration 

One potential way forward would be to establish a PPS disease register. Whilst a 

full consideration of the specific configuration of such a register would require 

much greater detail that can be afforded in this paper, the potential for such a 

register is clear. 

In this regard the approach taken by the British Paediatric Surveillance Unit 

(BPSU) is notable in that it uses a passive reporting mechanism from clinicians to 

provide specific cases that can then be followed up in a more structured way by 

those undertaking the specific surveillance. 

Whilst such an approach is clearly within the domain of research, such an 

approach could allow for the development of a more permissive register in which 

people with PPS give clear consent for their data to be stored and used more 

formally for surveillance purposes. 

46

Annex D – Lymphoedema 

Recognising the signs of lymphoedema 



• Swelling that may initially reduce if the limb is raised. 

• Feelings of tightness, heat or tingling in the limb and or trunk area. 

• Difficulties with tight clothing or footwear. 

• Changes in the skin ranging from dry, itchy skin, to scaly weeping skin, 

redness and infection, or blister-like changes called lymphangiectasia 

(bulging lymphatics). Eventually the skin becomes thickened or uneven 

due to papillomatosis (a cobblestone appearance). 

Stemmer’s sign (the inability to pinch the skin at the base of the second toe) is a 

diagnostic sign of lymphoedema. Other investigations such as 

lymphoscintigraphy may be undertaken but can be costly and inconclusive. 

Self management of lymphoedema 

Support is required with various aspects of self management including: 

• Skin care: the skin should be kept clean and well moisturised. Clothing 

and shoes should be well-fitting and supportive, and socks changed daily 

where possible. Care is taken to reduce the risk of skin injury, for example 

from a scratch or insect bite, as this can lead to infection. A two-week 

course of antibiotics may be required if cellulitis (tissue infection) 

develops. 

• Exercise and movement: this may include walking, swimming, specialist 

exercise and movement classes or physiotherapy advice, as relevant to 

the individual. 

• Wearing compression garments such as stockings or sleeves: these are 

usually worn daily and are fitted by a trained practitioner such as the 

lymphoedema practitioner. There are specific lymphoedema garments 

that help to reduce swelling available on GP prescription, on the advice of 

a lymphoedema specialist. 

47



• Other support with understanding lymphoedema, weight management, 

lifestyle changes, emotional wellbeing, and self-massage may be also 

given. 

Specialist treatment of lymphoedema 

This can include intensive courses of daily treatments aiming to reduce the 

swelling, improve the skin condition and reshape the limb to allow fitting of 

compression garments. Each treatment may combine manual lymph drainage 

massage with application of a layered bandage to the swollen area. Specialist 

exercises are given and other approaches such as kinesiotaping (a thin adhesive 

tape on the skin) may be used. 

Diuretics are not advised for lymphoedema, as they can lead to dehydration and 

do not improve the lymphatic system function. 

48



Annex E – BPF orthotic services survey – key findings 

The research was conducted via a self-completion survey, which was sent to 

2,000 BPF members in April 2008, and generated 862 responses (43%). While it 

should be noted that these responses were received from members from all over 

the UK, the SPPN’s own research seems to indicate that Scottish polio survivors 

have similar concerns as illustrated by these results 

465/862 respondents identified themselves as using orthoses, defined as 

“specialist footwear, callipers, crutches, walking frames and similar”. The 

majority of respondents had used orthotics for 30 or more years. As the BPF 

survey commentary notes, this indicates the need for the specialists ‘ . . .to keep 

their patients up to date with new developments; since materials must have 

developed a great deal since these people first had polio or needed orthotics.’ 

Key findings of the BPF orthotic survey 

• 17% of respondents never see the same team and 12% do so only 

occasionally. 

• Respondents are broadly satisfied with the competence and care they 

receive. Overall, the proportion that is not satisfied is as follows: 

- 21% with the competence of the Technician 

- 19% with the competence of the Orthotist 

- 15% with the care they receive from the team 

• 19% of respondents said that they wait 7 weeks or more for an 

assessment. Only 2% feel this length of wait is reasonable. 

• Once they arrive at the assessment, there are mixed views about it. 31% 

are given as long as they feel they need in the appointment, whereas 26% 

are given only 10 or 15 minutes. 

• 7% of respondents have never seen an Orthotist and 30% have never 

seen a Technician. 

49



• Despite the length of time they have used orthotics, 29% of respondents 

have never been re-assessed, to ensure the suitability of their aids and 

44% have never had discussions with their specialist about other products 

or treatments. 

How does the service need to be improved? 

On this question, it was noted that some respondents are very satisfied with the 

service they receive. However, around one fifth (and sometimes more) are not 

satisfied. There were many individual comments made about the one thing that 

would improve the service. The top three mentions were: 

• Longer appointments are needed 

• More modern materials / styles should be provided 

• They need direct contact with manufacturers 

Many respondents also included additional comments, the key themes being: 

• The service is getting worse and Orthotists often are located in “back 

rooms” with poor facilities for medical staff and patients 

• Patients often give up after they have tried, in vain, to obtain orthoses 

that “work” for them and are comfortable 

• On-site manufacture / repair is infinitely better than sending orthoses 

off-site (often many miles away) and frequently having to send them 

again for more adjustments 

• The medical service should listen more to patients, who have many 

years’ experience and a really good idea of what will work for them 

On several measures, very variable experiences were reported, for instance, just 

over one third of respondents reported that they could be reassessed whenever 

they request it. However, 29% had never been re-assessed. Bearing in mind 

how long these people have used orthotics, clearly that means that potentially, 

some people are living with very out of date aids. 

50



Annex F – Map of medicine guideline on PPS © Map of Medicine Ltd 

Post-polio syndrome (PPS) - suspected 

51 

Clinical presentation 

Primary investigations 

Post-polio syndrome 

(PPS) definite, 

possible or excluded? 

Definite Possible 

Excluded at this time 

Refer and treat PPS Refer and treat 

polio-related 

co-morbidity 

Refer for rehabilitation 

management 

Go to PPS - 

rehabilitation and 

management 

Background 

information 

Yes 

Information resources 

for patients and carers 

History Examination 

Consider referral 

for secondary 

investigations 

Refer for secondary 

investigations 

PPS definite? 

Published: 31-Jan-2011 Valid until: 28-Feb-2014 © Map of Medicine Ltd All rights reserved 

No 

Updates to this 

pathway 

Refer or treat other 

conditions 

Reconsider coexistent 

PPS 

This care map was published by International. A printed version of this document is not controlled so may not be up-to-date with the latest clinical information. 

For terms of use please see our Terms and Conditions http://mapofmedicine.com/map/legal

Annex G 



Telecare and Other Technologies 

to Support People with Disabilities and Long Term Conditions 

“Telecare – the Vision 

Telecare is a term that covers a range of devices and services that harness 

developing technology to enable people to live with greater independence and 

safety in their own homes. The opportunities arising from Telecare have been 

rapidly expanding as the underlying technology has become more sophisticated 

and its uses have been explored with imagination and creativity.” 

(Seizing the Opportunity: Telecare Strategy 2008-2010) 

What are the symptoms of Post Polio Syndrome? 

“Symptoms include the onset of new weakness or abnormal fatigue in previously 

affected or unaffected muscles, a general reduction in stamina, muscle and/or 

joint pain, muscle atrophy, breathing, sleeping and/or swallowing problems or 

cold intolerance. Symptoms may lead to loss of endurance or function.” 

http://www.britishpolio.org.uk/default.aspx 

How can these technologies help people? 

Telecare technologies can assist people in many ways: 

• By increasing independence and choice for individuals. 

• By maintaining and promoting independence, safety and security to improve 

an individual’s quality of life. 

• By enabling the individual to live at home longer and prevent them having to 

move from their home to higher levels of care. 

• By giving carers effective support, respite and peace of mind. 

• By preventing inappropriate hospital admissions. 

• By facilitating an individuals’ early discharge from hospital. 

• By helping to manage risk in the home and reduce accidents and falls. 

• By enabling agencies to provide improved and focused care delivery. 

52



Types of Telecare Technology to support People with Post Polio 

Syndrome 

DESCRIPTION AND EXAMPLES 

Telecare 

Usually managed by Social Work and is a 24/7 service. Can be a basic 

Alarm unit which links into a contact centre, staff there can initiate the most 

appropriate response i.e. Community Alarm Service. Alerts can also be set up to 

be responded to by someone else in the house. 

The range of alarms, detectors and sensors include: 

smoke, gas, CO2, flood, fall, temperature extremes, occupancy sensors, 

epilepsy monitors, internal pagers, cooker shut offs, etc. 

Case study example 

Mrs Brown is 75 and lives with her daughter who works full time. Mrs. Brown has 

mobility and balance problems and is at risk of falling. 

She has also become a bit forgetful, and has flooded the bathroom twice, and 

burned a number of pots in the kitchen. If she drops something, she cannot pick 

it up, which can cause hazards. 

There are concerns about her safety and ability to continue living with her 

daughter. 

Mrs Brown is up often overnight for the toilet, and her daughter is afraid she will 

fall. She finds it difficult to reach for light switches as she uses a walking aid. 

Mrs Brown was helped as follows:-. 

• She was supplied with a community alarm unit and tilt/fall pendant 

• She was referred to a ‘falls management programme’. 

• Supplied with detectors for flood, smoke, and gas. 

• Passive infra-red (PIR) movement sensors were placed at her bed and 

leading through to the toilet, as she gets up for the toilet overnight, 

lamps/lights go on in sequence as she moves through the house to the 

toilet. 

• A pillow buzzer that is programmed to vibrate when the PIR sensor is 

activated, lets her daughter know that Mrs Brown is up. She can then 

listen for her mother’s safe return to bed. 

• The contact centre responds to alerts during day. 

53



Assistive Technology – Environmental Controls 

Usually managed by the Health Services. These systems work with a main 

controller, which controls home devices that are operated by infra-red or radio 

frequencies (a very sophisticated remote controller). 

The controller scans through programmed options with visual and/or audio 

feedback. There are a range of switches which give people with physical 

disabilities the ability to have some choice and control over what they do in their 

own homes. Because of the patchy nature of polio, a survivor may have enough 

hand function to press a switch, but be unable to reach it, an environmental 

control is one solution that might help that. For those with very poor or no hand 

power, switches needing very minimal movement are available. 

The range of functions it can operate includes: 

Door intercom, door entry, door openers, hands free telephone, home 

entertainment, curtain openers, fans, radio, electrical heaters, computers etc. 


Michael is 54 and lives with his wife who works full time. He is a wheelchair user 

with limited use of his right hand and he fatigues easily. He has great difficulty 

reaching and operating switches and controls for most household appliances and 

is unable to open and close doors. When alone Michael is confined to the house. 

Michael was provided with an environmental control system, and now has control 

over: 

• A full door entry system including intercom; door release; and door 

opener. 

• Lights and lamps in his bedroom and living room. 

• All of his home entertainment in his living room and bedroom. 

• His profiling bed. 

• Access to his community alarm. 

• Switching on his computer. 

• Temperature control. 

Telehealth monitoring 

Remote monitoring of people with long term conditions such as respiratory 

disease, cardiac disease, diabetes etc. to promote proactive management, 

prevent hospital admissions, speed up discharges and aid self management. 

These systems operate via a unit in the individual’s home which has attachments 

linked to the unit which can measure and monitor ECG, blood pressure, heart 

rate, weight, circulating oxygen, respiratory function, bloods for diabetes and 

clotting. Individual’s normal parameters of measurements are logged. The 

measurements are sent to one point where they are received by a clinician. 

54



The system triages the results with a ‘red, amber, green’ alert so that the clinician 

can target only those people whose measurements give rise for concern. 


Mr A is 64 and lives with his wife. He has respiratory problems which severely 

limits his activities and his life. He is considered to be uncooperative with his 

treatment and medication. He has had 2 hospital admissions in the last 3 

months of several days duration and he does not like being in hospital. 

Mr A was provided with a telehealth monitoring system. His normal parameters 

of blood pressure, heart rate and circulating oxygen were gathered. He checks 

these measurements daily, and submits the results via broadband to a secure 

website. Mr A is taking a more active and proactive role in his condition, and 

instigating calls to the clinicians when he identifies that his measurements are 

changing. As changes in his condition are identified quickly, medication or other 

treatments can be adjusted as necessary. Mr A avoids unnecessary hospital 

admissions and is much happier at being treated at home. 

Smart housing 

A combination of Telecare and smart house technologies involving almost all 

aspects of the home environment to help people live safely and independently. 

By combining technologies for sensing, analysis, control and communications it 

can support people with a wide range of physical and cognitive needs 

It takes into account the context of events, either in terms of what is happening at 

that time or has happened in the past, and then reacts in the most appropriate 

way for that situation. 

This could be to call for assistance, prompt the user on the most appropriate 

course of action, or take no action itself. 


David is an 18 year old male with mild learning disability and some physical 

disabilities. He lives with his parents and brother but wants to live independently. 

His parents are concerned about his ability to manage independently and for his 

safety. 

He is assessed by having a weeks stay at the SMART house to determine his 

needs and any technology which might help. At the end of the week there is 

information to show how David has managed on his own. It details which alerts 

have been activated and how often. There is also information to show whether 

David responded to these alerts appropriately. From this information appropriate 

technologies to support David can be supplied. 

55



Wheelchair use in LEOP 

Two problems cause particular concern in post-polio: the need to begin using a 

wheelchair after many years of independent mobility; and transition from manual 

self-propulsion to a powered wheelchair. 

In the first of these, the concern arises in the determination of people who have 

had polio to retain independence. Transition to using a wheelchair may therefore 

be seen as a defeat, or even giving in. However, wheelchair mobility in many 

cases needs less energy than walking, especially walking with a grossly impaired 

gait. Wheelchair use can also spare the strain on joints in the legs (although 

there can be demands on upper-limb joints). Thus with advancing muscle 

weakness, joint degeneration, or declining exercise tolerance, transition to 

wheelchair use can be a positive move, allowing more social activity (provided 

the environment does not provide obstacles). A further issue is people who fall 

frequently: a wheelchair can be much safer. However, health professionals 

advising such a change need to be sensitive to the anxieties that someone with 

polio may experience at this point. 

As post-polio progresses, however, self-propulsion can give rise to its own 

problems. Weakness and poorer exercise tolerance may make self-propulsion 

hard, especially when the weakness is in arm or trunk muscles. In these 

circumstances, some authorities believe muscle weakness could be accelerated 

by self-propulsion. Joints in the arm (especially the shoulder) can become 

painful, and arthritis can deteriorate. Powered chairs may then become 

necessary. Wheelchair users then need to consider statutory or private sources 

of chairs. 

NHS provision of wheelchairs has to date been limited been limited to those 

unable to walk or self-propel indoors. Post-polio survivors have sometimes 

reported feeling disadvantaged by this, as they may be able to walk short 

distances, but fatigue rapidly; and some are concerned that continued selfpropulsion 

can be harmful. In fact, NHS powerchair prescription is possible if it is 

medically inadvisable to self-propel; and the conditions for NHS provision are 

currently under review. In addition equipment to preserve employment, including 

powerchairs where appropriate, can sometimes be funded by the Department of 

Work and pensions “Access to Work” scheme. 

Powerchairs can sometimes have additional features, such as seat tilting, or 

elevation of the seat to allow access to high tables or shelves. These features 

may allow longer tolerance of the sitting position, or increase independence. If 

the user cannot manage standard joystick hand control, a variety of special 

controls can be fitted, though these are rarely successful in outdoor 

environments. Taken together, these additional features can assist the postpolio 

survivor to continue independent mobility in most cases. 

56

Annex H – Membership of working group 



Professor Jim McKillop, Deputy Executive Dean of Medicine and Muirhead Professor of 

Medicine, University of Glasgow (Chair) 

Ms Helene Maclean, Scottish Post Polio Network 

Ms Agnes Walker, Scottish Post Polio Network 

Ms Brian Wellington, Scottish Post Polio Network 

Ms Christine Black, Scottish Post Polio Network 

Ms Elaine Figgins, Reader in Orthotics, University of Strathclyde 

Dr Stephen Banham, Consultant Respiratory Physician, Gartnavel Hospital, Glasgow 

Ms Anne Williams, Cancer Research Nursing Fellow, Napier University/NHS Lothian 

Professor Nigel Thorp, lay member 

Dr Richard Petty, Consultant Neurologist, NHS Greater Glasgow & Clyde 

Dr Christopher Roy, Consultant in Rehabilitation Medicine, Southern General Hospital, Glasgow 

Professor David Stott, David Cargill Professor of Geriatric Medicine, University of Glasgow 

Dr Alison Wilson, Director of Pharmacy, NHS Borders 

Dr Jane Kunkler, Consultant Clinical Psychologist, NHS Lothian 

Ms Irene Ogilvie, senior physiotherapist (retired) and lay member 

Professor David Rowley, Professor of Orthopaedics, University of Dundee 

Professor Rosemary Richardson, Practice Development Lead, Dietetics 

Dr Bill Mathewson, Royal College of General Practitioners 

Mr John McLoone, Podiatrist, NHS Lanarkshire 

Secretariat 

Dr Sandra Watson, Medical Secretary (Senior Medical Officer, SGHD) 

Mr Will Scott, Branch Head, Long term Conditions Unit, SGHD 

Miss Fiona Maxwell, National Network Manager, SGHD 

57

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58

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